Where to even begin? It's been quite an interesting last two months at home (who would have thought we would all be hunting for toilet paper?).
So I’ll just give you a little overview of what life has looked like since the first week of March (our return home). We arrived back in Austin right before COVID19, shelter in place, and everyone felt it was necessary to hoard all essential..and nonessential items...poof gone. But we are so thankful to be locked down altogether in OUR HOME.
We have many friends that were/are still inpatient, and only one parent is allowed and NO switching- so one parent, mom or dad, can not see their baby.
Quarantine life is not foreign to us, we have been constantly washing hands, sanitizing, staying away from crowds and having limited/no visitors since Noah was born, but not being able to find essential items that we NEED for Noah was new territory and didn't help our already stressful situation.
Our neighbors, who a year ago I only knew 2-3, has grown to a community of 20-30 people that have rallied behind Noah and our family and they didn’t stop once we got back home. They have dropped off diapers, formula, meals, groceries…. it was and is such a huge blessing. I don’t have my family near, and of course, they have been unable to come to visit, but it now feels like we have family right in our neighborhood. God didn’t make a mistake placing us here, right here, in this house, surrounded by the love of this neighborhood.
We have a nurse coming a few hours a day/5 days a week since the end of March, and it's provided so much relief and peace of mind having a second pair of eyes. We are so blessed to have found someone that truly loves Noah and wants him to thrive as we do. Noah also loves her!
My parents were supposed to come mid-March and bring back Miss Sadie, our King Charles Cavalier, who has been staying in Florida and living the life since last July (2 weeks before Noah was born). But due to COVID, Noah’s heart, and my dad's heart failure, canceling the trip was a must for everyone to stay safe.
Noah hasn’t gotten to meet his big sister yet and we are anxious to get her back and see how much they love each other. We are hoping in the next few weeks!
Of course, there has been so much happening on our end with Noah. Our days are much less hectic than the hospital days. Noah has to be constantly busy or held and he loves it outside!. We have had a lot of changes, meds, doctor's appointments, a couple of echocardiograms. We have taken so many steps forward, a couple steps back, and in some areas, like his vomiting and weight gain, we have just stood still- which can be more frustrating than ever.
For the most part, Noah has been stable heart-wise and we have managed to stay out of the hospital! Hallelujah!
His heart has made no changes, it hasn't gotten better nor worse. He still has moderately depressed function and upper-moderate Tricuspid Valve Regurgitation. Our current team believes that transplant may be the best option as the next step for Noah, instead of the Fontan, but we aren't there yet as we are still able to manage his heart failure medically. We were originally supposed to get a CT scan of Noah's heart in March, as he had some pulmonary collaterals previously and these may need to be addressed.
Due to COVID, the CT scan was postponed but we will now be getting it done this Thursday, May 7th at 9 am. We will be checking in to the hospital around 730am and only I will be allowed to be there which will be so hard! We are hoping that this can just be an outpatient test, but it will depend on how Noah handles sedation.
Noah had to get tested for CoVID-19. It was a requirement since he will be going under anesthesia for his CT scan. We did a drive up test and it was quick and Noah barely cried. He was laughing at the people dressed in crazy outfits.
They said they will not be calling to let us know if the results are negative, only if they are positive.
Brandon and I have a really tough decision to make in regards to Noah's care and moving forward. I don't want to dive too much into it yet, but I will update everyone once we have made our final decision and feel 100 percent confident about it.
We are grateful for an amazing team of doctors here that are exceptional at communicating no matter what time it is. Each week we have been home, we have had to call the emergency line, bags packed to go to the ER, but were able to get him stabilized at home with the guidance of Noah's doctors that know him so well.
Noah is making huge steps forward with his development. His personality is quite strong and he is almost sitting up by himself. He just finally started putting weight on his legs and he can go backward in his walker! He talks up a storm and he sleeps great through the night (usually).
We have had outings on the boat, went strawberry picking and we try to spend a lot of time outside enjoying the fresh air!
But not everything has been easy. Feeding wise, Noah's oral aversion has continued to worsen. Gagging, retching and puking 10-15 times a day sometimes at even the sight of seeing the milk he is about to receive through his Gtube.
He will not eat anything by mouth, at all. We haven't received consistent therapy since we moved back due to the company we work with does not offer telehealth, and having 3 different therapists (PT, OT, and Speech) coming in multiple times a week is something I feel comfortable within the midst of corona.
It's exhausting, frustrating, and some days are so defeating. I want to make this better for Noah but I feel completely helpless. We are currently on 30 doses of medications a day (and throughout the night.) And gaining weight hasn't happened.
It’s a known issue in the heart world (weight gain, feeding intolerances) but 6 months ago I never would have thought we would be here, not Noah, not the baby that was eating by mouth completely, and taking all his meds orally just 6 months ago... we weren’t going to end up here... I was sure of it.
So how did we? I’ve found myself going down the shameful path of guilt with this one. "I should have done things differently." "I should have kept pumping, maybe he would tolerate breastmilk better" "I should have tried to give him the bottle more after surgery" "I should have just said no to the Gtube, it only made his vomiting worse" What an unhealthy, unproductive spiral of thoughts to go down. Treading through these waters of feeling SO incredibly thankful that we made it here, to quickly sinking of exhaustion after running in survival mode the last 9 months. The things you witness, see and hear, do not just go away.
Since we have been home we are working through a lot of these anxieties, and past trauma with therapy, communication, and just thriving to be the best version of ourselves for Noah. Day by day, moment by moment! We are just so incredibly thankful to be here, together, quarantined or not, enjoying our smiling boy!!